Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 , a pulmonary specialist would be able to diagnose sarcoidosis. Then the problem would be they would want to put you on steroids. Check out this website. http://www.sarcinfo.com a ???What is this? I too have had sinus problems, it seems like forever. Last time I went into my condo, well actually, I didn't even make it in the door, I wound up up with terrific shortness of breath that lasted for two weeks while I used an inhaler and took steroids. (Yes, I was even wearing a respirator...) Before that I thought my shortness of breath was from being out of shape, but no more. What is sarcoidosis? And what kind of doctor can diagnose it? Or whatever it is that's wrong with me? I'm seeing an allergist at Kaiser who doesn't believe in mold--he thinks indigestion is causing my sinus problem. Truly it is so difficult to figure out what's what after being exposed! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 , a pulmonary specialist would be able to diagnose sarcoidosis. Then the problem would be they would want to put you on steroids. Check out this website. http://www.sarcinfo.com a ???What is this? I too have had sinus problems, it seems like forever. Last time I went into my condo, well actually, I didn't even make it in the door, I wound up up with terrific shortness of breath that lasted for two weeks while I used an inhaler and took steroids. (Yes, I was even wearing a respirator...) Before that I thought my shortness of breath was from being out of shape, but no more. What is sarcoidosis? And what kind of doctor can diagnose it? Or whatever it is that's wrong with me? I'm seeing an allergist at Kaiser who doesn't believe in mold--he thinks indigestion is causing my sinus problem. Truly it is so difficult to figure out what's what after being exposed! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 I am very hesitant to try to answer questions on this. I don't even know how they diagnose sarcoidosis. A lot of us with CFIDS and Lyme are trying the protocol for ourselves on the assumption that we have the same type of inflamation and can use the antibiotics as well to kill off the infections. I would encourage you to join the email list for this, if only for a couple of weeks until you can learn more from people who know more than I. I do seem to have less problems with mold since starting the Benicar. I think the problems we have are interrelated, but I don't know how. marshallprotocol/ a Hi a, I too am now wondering about sarcoidosis. The website you posted was very informative! I have 3/4 of the symptoms that they describe and so do my children. Is there a blood test to diagnosis this? Thanks, Kathie a Carnes <pj7@...> wrote:, a pulmonary specialist would be able to diagnose sarcoidosis. Then the problem would be they would want to put you on steroids. Check out this website. http://www.sarcinfo.com a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Whoa, , you may have timed your diagnosis just right for a cure. You really will want to join the new email list on this Dr. Trevor Marshall's new research. It started out as a treatment for sarcoidosis and now is evolving to treat cfs and Lyme disease. We shall see. http://www.sarcinfo.com and marshallprotocol/ a Carnes Hi , I had orginally posted a week ago that I was told I have Sarcoidosis. Well, I went to the Pulmonologist today, and he said " can't say for sure yet, need to run tests, but I think you have Sarcoidoisis. " The blood test u need done is to have your ACE level checked. That is almost always elevated if Sarcoid is present. It is normally under a count of 65, mine is 120, DOUBLE what it should be. I also have had shortness of breath since January. A baaaad sinus problem since Janyary. BUT the KEY factor in my case is I came down with Uveitis, an inflamatory eye disease, that the specialist said, almost all people with uveitis, have Sarcoid. My symptoms of Uveitis were a red eye for a period of time. I had this for months, which I thought was caused by the ongoing sinus problem, but one day, it turned BLOOD red, and was sooooooooooooooooo painful, when I looked into any light. Crippling is a good way to describe the pain that day. A chest X-ray is also needed. Mine did show something, but he ordered a CAT scan of my lungs, where they injected dye into my arm. Had that fun test done this afternoon. Next is a trip to a Dermatologist, to look at strange marks on my chest. If the Derm is unable to come to a conclusion I am to have a Broncoscopy. A wonderful test, where they will sedate me, and put a tube/scope up my nose, down my throat, and he will take pcs of my lungs, to confirm Sarcoid. I feel very good since I have been on 2 weeks of Prednisone. I do not want to go back on Prednisone, I am very interested in the article posted earlier about anti-biotics to treat Sarcoid. I suggest the ACE blood test, along with a test that reveals an auto-immune disease. Mine was positive. I did ask my DR, is this in any related to mold??? He said my IGe was elevated, but he said " NO " . I hate to think, that the mold is the cause. Either way, at least they are narrowing this problem down, somewhat anyway. Hope u are doing well. > ???What is this? I too have had sinus problems, it > seems like forever. Last time I went into my condo, > well actually, I didn't even make it in the door, I > wound up up with terrific shortness of breath that > lasted for two weeks while I used an inhaler and took > steroids. (Yes, I was even wearing a respirator...) > > Before that I thought my shortness of breath was from > being out of shape, but no more. What is sarcoidosis? > And what kind of doctor can diagnose it? Or whatever > it is that's wrong with me? I'm seeing an allergist at > Kaiser who doesn't believe in mold--he thinks > indigestion is causing my sinus problem. > > Truly it is so difficult to figure out what's what > after being exposed! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Whoa, , you may have timed your diagnosis just right for a cure. You really will want to join the new email list on this Dr. Trevor Marshall's new research. It started out as a treatment for sarcoidosis and now is evolving to treat cfs and Lyme disease. We shall see. http://www.sarcinfo.com and marshallprotocol/ a Carnes Hi , I had orginally posted a week ago that I was told I have Sarcoidosis. Well, I went to the Pulmonologist today, and he said " can't say for sure yet, need to run tests, but I think you have Sarcoidoisis. " The blood test u need done is to have your ACE level checked. That is almost always elevated if Sarcoid is present. It is normally under a count of 65, mine is 120, DOUBLE what it should be. I also have had shortness of breath since January. A baaaad sinus problem since Janyary. BUT the KEY factor in my case is I came down with Uveitis, an inflamatory eye disease, that the specialist said, almost all people with uveitis, have Sarcoid. My symptoms of Uveitis were a red eye for a period of time. I had this for months, which I thought was caused by the ongoing sinus problem, but one day, it turned BLOOD red, and was sooooooooooooooooo painful, when I looked into any light. Crippling is a good way to describe the pain that day. A chest X-ray is also needed. Mine did show something, but he ordered a CAT scan of my lungs, where they injected dye into my arm. Had that fun test done this afternoon. Next is a trip to a Dermatologist, to look at strange marks on my chest. If the Derm is unable to come to a conclusion I am to have a Broncoscopy. A wonderful test, where they will sedate me, and put a tube/scope up my nose, down my throat, and he will take pcs of my lungs, to confirm Sarcoid. I feel very good since I have been on 2 weeks of Prednisone. I do not want to go back on Prednisone, I am very interested in the article posted earlier about anti-biotics to treat Sarcoid. I suggest the ACE blood test, along with a test that reveals an auto-immune disease. Mine was positive. I did ask my DR, is this in any related to mold??? He said my IGe was elevated, but he said " NO " . I hate to think, that the mold is the cause. Either way, at least they are narrowing this problem down, somewhat anyway. Hope u are doing well. > ???What is this? I too have had sinus problems, it > seems like forever. Last time I went into my condo, > well actually, I didn't even make it in the door, I > wound up up with terrific shortness of breath that > lasted for two weeks while I used an inhaler and took > steroids. (Yes, I was even wearing a respirator...) > > Before that I thought my shortness of breath was from > being out of shape, but no more. What is sarcoidosis? > And what kind of doctor can diagnose it? Or whatever > it is that's wrong with me? I'm seeing an allergist at > Kaiser who doesn't believe in mold--he thinks > indigestion is causing my sinus problem. > > Truly it is so difficult to figure out what's what > after being exposed! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Hi a, I have been on sarc.info since I 1st heard of Sarcoid 2 weeks ago. Terrific group of people, and so knowledgeable. The Marshall Protocol seems like the way to go. All I need now, is to convince my DR, and if he does not want to discuss, it is on to a different Dr. Sarc.info sent me a list of NJ Dr's that are familiar with the program. I am already thinking of seeing them, as he has mentioned a one month dose of Prednisone for my eye problem. Why is Prednisone their 1st answer. That stuff is for the birds. It works like a miracle drug, as all of my symptoms clear up in a matter of hours, BUT, u can become soooo addicted to it, and cause more harm than good. I equate it is like taking asprin for a brain tumor. The pain subsides, but the cancer is still running rampant. Sure on the Pred, u have no symptoms, but the Sarcoid is running amuck. I will keep u posted, and I am still trying to find another place to live. I still think it is my apartment...... Take care, > > ???What is this? I too have had sinus problems, it > > seems like forever. Last time I went into my condo, > > well actually, I didn't even make it in the door, I > > wound up up with terrific shortness of breath that > > lasted for two weeks while I used an inhaler and took > > steroids. (Yes, I was even wearing a respirator...) > > > > Before that I thought my shortness of breath was from > > being out of shape, but no more. What is sarcoidosis? > > And what kind of doctor can diagnose it? Or whatever > > it is that's wrong with me? I'm seeing an allergist at > > Kaiser who doesn't believe in mold--he thinks > > indigestion is causing my sinus problem. > > > > Truly it is so difficult to figure out what's what > > after being exposed! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Hi a, I have been on sarc.info since I 1st heard of Sarcoid 2 weeks ago. Terrific group of people, and so knowledgeable. The Marshall Protocol seems like the way to go. All I need now, is to convince my DR, and if he does not want to discuss, it is on to a different Dr. Sarc.info sent me a list of NJ Dr's that are familiar with the program. I am already thinking of seeing them, as he has mentioned a one month dose of Prednisone for my eye problem. Why is Prednisone their 1st answer. That stuff is for the birds. It works like a miracle drug, as all of my symptoms clear up in a matter of hours, BUT, u can become soooo addicted to it, and cause more harm than good. I equate it is like taking asprin for a brain tumor. The pain subsides, but the cancer is still running rampant. Sure on the Pred, u have no symptoms, but the Sarcoid is running amuck. I will keep u posted, and I am still trying to find another place to live. I still think it is my apartment...... Take care, > > ???What is this? I too have had sinus problems, it > > seems like forever. Last time I went into my condo, > > well actually, I didn't even make it in the door, I > > wound up up with terrific shortness of breath that > > lasted for two weeks while I used an inhaler and took > > steroids. (Yes, I was even wearing a respirator...) > > > > Before that I thought my shortness of breath was from > > being out of shape, but no more. What is sarcoidosis? > > And what kind of doctor can diagnose it? Or whatever > > it is that's wrong with me? I'm seeing an allergist at > > Kaiser who doesn't believe in mold--he thinks > > indigestion is causing my sinus problem. > > > > Truly it is so difficult to figure out what's what > > after being exposed! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 , I am totally in agreement and understanding that your building may be making you sick. I just hope if you can get on the Marshall Protocol other issues may lessen. For instance the sunlight making us sicker - as we recover we can then be out in the sun without reacting. Yes, the prednisone has horrible side effects. I had a good friend who died of kidney failure at age 34. She had already had a heart by-pass. Why? She had severe lupus and was on massive doses of prednisone since age 14. I don't know the solution, maybe Marshall Protocol, but prednisone is not it. The main reason being that prednisone suppresses the immune system allowing the germs that CAUSE the diseases to multiply. Benicar suppresses the inflamation, IFN gamma, but not the entire immune system. If it works it is going to be a " miracle " for a lot of people. a Hi a, I have been on sarc.info since I 1st heard of Sarcoid 2 weeks ago. Terrific group of people, and so knowledgeable. The Marshall Protocol seems like the way to go. All I need now, is to convince my DR, and if he does not want to discuss, it is on to a different Dr. Sarc.info sent me a list of NJ Dr's that are familiar with the program. I am already thinking of seeing them, as he has mentioned a one month dose of Prednisone for my eye problem. Why is Prednisone their 1st answer. That stuff is for the birds. It works like a miracle drug, as all of my symptoms clear up in a matter of hours, BUT, u can become soooo addicted to it, and cause more harm than good. I equate it is like taking asprin for a brain tumor. The pain subsides, but the cancer is still running rampant. Sure on the Pred, u have no symptoms, but the Sarcoid is running amuck. I will keep u posted, and I am still trying to find another place to live. I still think it is my apartment...... Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 , I am totally in agreement and understanding that your building may be making you sick. I just hope if you can get on the Marshall Protocol other issues may lessen. For instance the sunlight making us sicker - as we recover we can then be out in the sun without reacting. Yes, the prednisone has horrible side effects. I had a good friend who died of kidney failure at age 34. She had already had a heart by-pass. Why? She had severe lupus and was on massive doses of prednisone since age 14. I don't know the solution, maybe Marshall Protocol, but prednisone is not it. The main reason being that prednisone suppresses the immune system allowing the germs that CAUSE the diseases to multiply. Benicar suppresses the inflamation, IFN gamma, but not the entire immune system. If it works it is going to be a " miracle " for a lot of people. a Hi a, I have been on sarc.info since I 1st heard of Sarcoid 2 weeks ago. Terrific group of people, and so knowledgeable. The Marshall Protocol seems like the way to go. All I need now, is to convince my DR, and if he does not want to discuss, it is on to a different Dr. Sarc.info sent me a list of NJ Dr's that are familiar with the program. I am already thinking of seeing them, as he has mentioned a one month dose of Prednisone for my eye problem. Why is Prednisone their 1st answer. That stuff is for the birds. It works like a miracle drug, as all of my symptoms clear up in a matter of hours, BUT, u can become soooo addicted to it, and cause more harm than good. I equate it is like taking asprin for a brain tumor. The pain subsides, but the cancer is still running rampant. Sure on the Pred, u have no symptoms, but the Sarcoid is running amuck. I will keep u posted, and I am still trying to find another place to live. I still think it is my apartment...... Take care, Quote Link to comment Share on other sites More sharing options...
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